Children's Mercy Makes a World of Difference
Vladimir Crouch was just a baby when his mother Elena noticed that her son was suffering from what seemed like a severe rash that caused his skin to crack and peel. While living in Wichita, Kan., she consulted several physicians, and then brought Vladimir to the Hematology/Oncology Department at Children's Mercy for low hemoglobin.
After running a battery of tests, a team consisting of a hematologist, geneticist, bone marrow transplant (BMT) physician and allergist/immunologist diagnosed Vladimir with Ommen's Syndrome, a rare autosomal recessive condition.
"Ommen's Syndrome is a very rare disorder. As an oncologist, you don't see cases often," explained Jignesh Dalal, M.D., assistant professor of Pediatrics, University of Missouri-Kansas City School of Medicine. How rare is rare? In a 2001 worldwide clinical summary of outcomes of 41 patients with Ommen's Syndrome, 17 survived while the remaining 24 passed away. In his tenure at Children's Mercy, Dr. Dalal has seen only three cases: one involved a child that had the only available treatment but had not survived, another child that sought treatment at a different facility, and Vladimir's case.
"Ommen's Syndrome is tricky to diagnose because there are nonspecific symptoms including the skin turning red, and the spleen and lymph nodes becoming enlarged," said Dr. Dalal. "Several disorders exhibit similar symptoms, so it's difficult to diagnose right off the bat. In Vladimir's case, we ran several tests and realized that he had Ommen's Syndrome." The other difficult piece regarding the disorder is that there is only one existing treatment, Bone Marrow Transplant (BMT). Without it, the disease is fatal.
In Vladimir's case, it was critical to boost his weak immune system so that he could successfully handle the treatment, so Dr. Dalal started with a heavy regimen of medications that would fight the infection, while looking for an appropriate BMT match. "Up to that point, Vladimir had been treading water; however, he needed to be physically strong enough for the BMT therapy. I have to say he is just one kid you cannot discount because he stabilized, we found a donor match and the BMT took. It's almost two years later and while he comes in for regular checkups, Vladimir is doing great."
Elena said, "We are very grateful to Children's Mercy and his donor for saving my son's life. We want to get the word out to everyone throughout the world the difference Children's Mercy and all donors have made in our lives."
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